Tuesday, February 7, 2012

Restless Sleep Syndrome

The other night my husband was lying in bed playing with his phone and I was washing my face, on my way to join him. He asked me what restless leg syndrome is. I said, "You know how I wiggle around and move every 30 seconds?" Yes, he knew. "Well it's like that but like 50x worse," I answered. Then he informed me because of my late nights and the horrible hours I keep I am impeding his sleep. The way he chose to tell me this was by hollering out, over the sound of running water splashing my face, "Well I have restless sleep syndrome, and it is all your fault! Yorkie and Porkie do too! It is a terrible condition that affects men in their 30's (my husband is 35) and dogs from ages 2-6 (Porkie is 2, Yorkie is 6). When you don't come to bed at the same time we do, well, we can't sleep!" Now restless sleep syndrome is not a medical condition or diagnosis, but was purely invented by my husband who clearly has illness envy. We giggled and laughed as he teased me and I hauled the laptop to bed in an effort to not exacerbate my dear husband's horrible restless sleep syndrome.

When I first started blogging I did not know the difference between a disease and a syndrome. So many things are attached to the word "syndrome" that are completely ridiculous. Years ago, when I was trying with all my might to get a diagnosis for this horrible pain and fatigue I was suffering from I became aware of a phenomena known as "white coat syndrome". See every time I went to the doctor my blood pressure was high, but at the end of the appointment it was fine. Well apparently this spike in blood pressure during a doctor appointment was common enough it had earned itself a name. Quite frankly the future of my life hung in the balance of the outcome of each doctor appointment. I was not at all shocked my blood pressure spiked from nerves. I was also in pain and that alone raises blood pressure. But I was not willing to go on blood pressure medication because I did not have high blood pressure! Or at least when I was not at the doctors I didn't. A few months back my mother was trying to find a home for a black dog she rescued off the streets. She told me about something called "black dog syndrome", where it is harder to find homes for black dogs than dogs of any other color. Now this is indeed true, it is harder and quite well known about in the rescue community. But the use of the word syndrome in this instance was frivolous, and knowing full well what it means by now, I hit the roof. 

See Fibromyalgia is a "syndrome". The condition that caused my strokes (RCVS) is a "syndrome". Hell even SIDS is a "syndrome" (Sudden Infant Death Syndrome). And AIDS, oh yes, AIDS is indeed a "syndrome" too. All the word syndrome denotes is, "A set of signs and symptoms that tend to occur together and which reflect the presence of a particular disease or an increased chance of developing a particular disease."* That is all. It does not mean it is not real. It is not imaginary or make believe or fantasy. It simply means they don't know the cause of a specific set of symptoms but the same symptoms are prevalent in enough people to assess there is actual illness causing these symptoms. So they give it a name and slap syndrome on the end of it and set out to research the cause of these symptoms. Sometimes they find it, as in AIDS, the cause is HIV. But sometimes they don't. Or it takes generations of patients morphing into an epic health crisis to really push them to source the root cause. The word syndrome will continue to be used in the medical community to denote an illness of unknown origin. And it will still be used by society to label things they cannot explain. But please, my friends suffering with Fibromyalgia Syndrome, don't think for one second your illness is any less real than a stroke-causing, baby-suffocating, deadly virus. It is not killing us, but man oh man is it real!

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